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[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 5097 Introduced in Senate (IS)]

<DOC>

118th CONGRESS
  2d Session
                                S. 5097

     To amend title XIX of the Social Security Act to establish a 
     demonstration project to improve outpatient clinical care for 
                 individuals with sickle cell disease.

_______________________________________________________________________

                   IN THE SENATE OF THE UNITED STATES

                           September 18, 2024

Mr. Booker (for himself, Mr. Scott of South Carolina, and Mr. Cassidy) 
introduced the following bill; which was read twice and referred to the 
                          Committee on Finance

_______________________________________________________________________

                                 A BILL

 
     To amend title XIX of the Social Security Act to establish a 
     demonstration project to improve outpatient clinical care for 
                 individuals with sickle cell disease.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Sickle Cell Disease Comprehensive 
Care Act''.

SEC. 2. ENABLING STATE MEDICAID PROGRAMS TO PROVIDE CARE THROUGH HEALTH 
              HOMES TO INDIVIDUALS WITH SICKLE CELL DISEASE.

    Section 1945 of the Social Security Act (42 U.S.C. 1396w-4) is 
amended--
            (1) in subsection (a), by inserting ``(and, beginning 
        January 1, 2025, to eligible individuals with sickle cell 
        disease (as defined in subsection (c)(5)))'' after ``chronic 
        conditions'';
            (2) in subsection (c)--
                    (A) in paragraph (1), by inserting ``and each 
                eligible individual with sickle cell disease'' after 
                ``chronic conditions''; and
                    (B) by adding at the end the following new 
                paragraph:
            ``(5) Special rule relating to sickle cell disease health 
        homes.--
                    ``(A) In general.--Beginning January 1, 2025, the 
                Secretary may approve a State plan amendment under this 
                section that is designed to provide health home 
                services primarily to eligible individuals with sickle 
                cell disease (in this section referred to as a `sickle 
                cell disease-focused State plan amendment').
                    ``(B) Requirement to provide dental and vision 
                services.--In the case of a sickle cell disease-focused 
                State plan amendment approved by the Secretary on or 
                after January 1, 2025, a State shall ensure the 
                provision of dental and vision services to eligible 
                individuals with sickle cell disease who are enrolled 
                in such health home. Such requirement shall apply 
                irrespective of existing requirements related to 
                comparability or whether or not the State provides 
                dental or vision services to other Medicaid 
                beneficiaries.
                    ``(C) Report requirements.--
                            ``(i) In general.--In the case of a State 
                        with a sickle cell disease-focused State plan 
                        amendment, such State shall, at the end of the 
                        first 8 fiscal year quarters that such State 
                        plan amendment is in effect, submit to the 
                        Secretary a report on the following, with 
                        respect to eligible individuals with sickle 
                        cell disease provided health home services 
                        under such State plan amendment:
                                    ``(I) The quality of health care 
                                provided to such individuals, with a 
                                focus on outcomes relevant to the 
                                recovery of each such individual.
                                    ``(II) The access of such 
                                individuals to health care.
                                    ``(III) The total expenditures of 
                                such individuals for health care.
                            ``(ii) Applicable measures.--For purposes 
                        of the report required under this subparagraph, 
                        the Secretary shall specify all applicable 
                        measures for determining quality of health care 
                        provided to eligible individuals with sickle 
                        cell disease, access to health care by such 
                        individuals, and expenditures on health care by 
                        such individuals.
                    ``(D) Best practices.--Not later than June 30, 
                2025, the Secretary shall make publicly available on 
                the website of the Centers for Medicare & Medicaid 
                Services best practices for designing and implementing 
                a sickle cell disease-focused State plan amendment, 
                based on clinical practice guidelines for sickle cell 
                disease developed by medical specialty societies and in 
                consultation with sickle cell disease providers and 
                patient advocacy organizations.
                    ``(E) Definitions.--For purposes of this section:
                            ``(i) Eligible individual with sickle cell 
                        disease.--The term `eligible individual with 
                        sickle cell disease' means, with respect to a 
                        State, an individual who satisfies all of the 
                        following:
                                    ``(I) The individual is eligible 
                                for medical assistance under the State 
                                plan or under a waiver of such plan.
                                    ``(II) The individual has sickle 
                                cell disease.
                                    ``(III) The individual may or may 
                                not have previously received health 
                                home services under any other State 
                                plan amendment approved for the State 
                                under this section by the Secretary.
                            ``(ii) Sickle cell disease.--The term 
                        `sickle cell disease' means an inherited blood 
                        disorder affecting red blood cells that occurs 
                        when an individual has inherited a sickle cell 
                        gene from each parent, as identified by a 
                        newborn screening or other genetic test.''; and
            (3) in subsection (h)(5), by inserting ``or a health home 
        for eligible individuals with sickle cell disease'' after 
        ``chronic conditions''.
                                 <all>
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